poetry, prose, and musings

Tag Archives: chronic illness

Every miserable day
and good one
near the water
or in a hospital
I try
I try
I try
My manta of gratitude
for functioning legs and serotonin uptake
quiet moments
and every last hug
for a soundtrack
and friendship
and good enough health
for those I love to make it to sunset
then sunrise
Repeat
Repeat
Repeat
Chaos and uncertainty
are too tight socks
pinching circulation
and leaving deep ruts
but limbs intact
if a tad blue
When I manage to roll them off
a more seamless state slowly returns
The heart relentless
doing its work
Pushing
Pushing
Pushing

She wished their lives
were filled with coconut covered
bunny cakes. That most days
were consumed with coloring
Easter eggs and running
on soccer fields. Mother/
daughter pedicures were
inked into the monthly
calendar. They all snuggled
up for Saturday movie nights.
Once a week, they hosted
a family game night. Everyone
helped prepare meals:
chopping, sautéing, stirring.
When any one of them hurt,
the others circled up, provided
comfort and encouragement.
They ate most every meal
at the same table at the same
time. She wished she could
spend all her time planning
adventures instead of scheduling
medical appointments, doling out
kisses rather than pills.

At 21,
I imagined her in college
or backpacking in Belize
working some 9-to-5 job that she loved or hated
so that she could earn enough money to cover her rent
and the cost of clubbing with her friends
making art and living in our basement
joining AmeriCorps and teaching children how to read
spending hours wandering in museums for inspiration
rarely leaving her room because she was so engrossed in creating new apps
or music
or poetry
or never being home because her social needs were so high that she was always out
in the world and we wished at least once a month she’d stop long enough to eat dinner with us
as a young, single, loving mother
on a boat in rough seas with Greenpeace protecting whales
married
researching grad school programs and stressing over paying back student loans
single and ambivalent about the status
obsessed with locating and meeting her birth parents
working in a tattoo parlor
preparing for medical school
skating in the Olympics
building a tiny house with her girlfriend near the edge of a lake next to the greenest forest
base jumping in every continent

All is less than optimal
it is not the future
that any parent imagines

I didn’t envision
the organ failure
or cancer
the speech therapy
and special education services
wrapping my arms around my tiny-in-frame but adult-in-age daughter
as she buried her head against my stomach
her body shaking
as we went to visit
the program she’ll enter
when she graduates from high school in June

My language is foreign to my peers
they struggle to understand and respond
mishear my hope and optimism
as acceptance or surrender
to this abrading future

Although I’ve learned to mine the joy and beauty
in the oddest of overlooked cracks
no dreams have been conceded
as I attempt to swallow with some grace
each of these real days

under this perfect sky
with the cardinals nesting
in the forsythia as witness
I’ll load the fire pit
with medical paperwork
from the 1990s
turn to vapor
documentation
of unruly DNA and disease
mix all that heartache with the last
of the wood from our fallen oak
and let it drift
transform into a thing
too ethereal
to hang on to any longer

chasing her down the steps
after midnight
she left no shoe
but a trail of crumbs
tongue full of red velvet
i haven’t slept for a century
mattresses piled on a pea
tossing like whitecaps
sirens calling intervals
howling “fix me” from a canyon
there’s a stomach portal
like the cows had in vet school
the Oz behind the curtain
better to not know
where cupcakes come to rest
cursing is encouraged
throw the fucking vase through the window
just leave the razor blades wrapped